In May, I was diagnosed with vestibular migraines and Alice in Wonderland Syndrome. We’re trying Botox to get symptoms under control, but I haven’t had a symptom-free day since diagnosis.

Before this started, I was an avid reader. I did stained glass. I also enjoyed kayaking, hiking, and camping. There are also a handful of video games I enjoyed.

Now, I’m struggling to find things to do. The heat is unbearable now (we’re over 100 degrees every day), so outdoor activities are oh-hold until it cools off. I can only tolerate reading for a very short time (this is breaking my heart). Video games typically have too much motion and I cant tolerate it. I haven’t tried doing stained glass yet, but might give that a go.

So, what do you all do? What hobbies can your brain and eyes tolerate? How do you pass the time? I’m literally sitting here in the semi-dark with my dog (who is thrilled I’m home so much now), dizzy as heck, tinnitus screaming in my ears, and desperate for something to do.

Started feeling a bit dizzy on day 4 of a cold with lots of congestion. What can I do to not let it get out of hand?? Trying to be chill

Hi all I’m just wondering if anyone has been on the euro star or tunnel with this and been ok due to go in two weeks. I last went on an hour steam train about two years ago in the dark at night and felt horrible the train was tilting to one side which didn’t help I really felt panicked.
I managed the trip but was glad to be off and no after effect.
Due to go on the tunnel to scared to fly my last experience was horrible. I’ve not left the UK for 12 years now due to this disorder but I’m ok in a car.

Will I feel dizzy will I feel the motion ? Please someone reply to me 🙏

Hi! I’m currently trying to get in with a headache/neurology specialist, so I’m not looking for anyone to diagnose me. I’m mostly curious whether people with vestibular migraine have experienced anything similar, because some of the posts here are starting to sound surprisingly familiar.

A few years ago, I got sick with what doctors thought may have been something viral. Afterward, I developed severe head pressure and vertigo. By the time I finally found doctors who took it seriously, the original illness seemed to have resolved, but a lumbar puncture showed elevated CSF pressure. I was eventually treated with acetazolamide, which helped significantly. An MRI also showed a mild Chiari malformation, although I was never told whether it was actually causing symptoms.

Things gradually improved, but ever since then I’ve had occasional “flares.” I can go long periods feeling completely normal, but when one happens, I get a really strange collection of symptoms.

The biggest ones are: • Pressure/fuzzy/heavy sensation around the base of my skull and neck. It’s usually more pressure than actual headache pain. • Ear pressure/fullness. In-ear headphones can become uncomfortable and sometimes make me feel dizzy. • Extreme fatigue. During a flare I can suddenly feel like I desperately need to lie down or sleep. • Significant neck/shoulder/upper-back muscle guarding. During this most recent flare my trapezius muscles became incredibly tight and my arms started feeling tired/shaky (although I still had normal strength/function). Urgent care confirmed that my traps were extremely tight, and baclofen helped tremendously. • Positional symptoms. Certain head/neck positions make everything substantially worse, and keeping my neck neutral tends to help.

The dizziness is particularly difficult to describe because I experience two different kinds.

When lying down at certain angles, especially during the original severe episode, I could get actual room-spinning vertigo. For months I could only sleep completely flat on my back with no pillow because other positions could trigger it.

When I’m upright, it’s different. I’ll be standing/walking normally and suddenly feel like I’m standing on a boat that abruptly lurched sideways, almost like I unexpectedly missed a step. Then it passes.

I also sometimes get a strange sensation with larger eye movements during flares. If I shift my gaze significantly away from straight ahead, I can sometimes feel a brief zing/pulling sensation behind my eyes. During the original illness I also occasionally had visible eye twitching in certain gaze positions.

Probably the strangest symptom is something I tried to explain to doctors years ago. When I would go from being upright to lying down, it felt like the weight/pressure inside my head needed 10–15 minutes to redistribute. The closest analogy I can think of is tilting a sandbag and feeling the sand slowly settle toward the new lowest point. I know fluid isn’t literally sloshing around inside my head—that’s just what the sensation felt like. When I got up the next morning, I’d sometimes need a few minutes for my equilibrium to feel normal again.

I also occasionally feel/hear my heartbeat starting around the base of my skull during a flare.

What’s confusing me is that I don’t typically get a painful migraine-type headache. My head can feel pressured/heavy/strange, but pain isn’t really the defining feature.

This latest flare also seems very connected to my neck and upper body. I finally got everything to relax and felt completely normal over the weekend, but after going back into the office today, my shoulders/upper back started tightening again and some of the head pressure/dizziness returned.

Again, I’m pursuing medical evaluation and not using Reddit as a substitute for a neurologist. I think I mostly want to know whether anyone else has experienced these bizarre, difficult-to-describe sensations, because trying to explain them makes me feel like I’m speaking another language sometimes. I live in a big city and Neurologists are booked out months in advance so even though I’m on the waitlist for several my actual appointment isn’t scheduled until December.

I have a consultation appointment for Botox for my chronic vestibular migraine. I experience daily rocking vertigo for six and 1/2 years, stiff neck, and some headaches. However, I do not meet the 15+ or more classic headaches a month. This might sound bad, but should I lie and say I do to get the Botox approved? I would much rather try Botox vs continue trying meds…I’m worried I won’t get approved based on the dizziness alone. Want advice. Thanks!

5 months ago I was at the gym and I was tired but motivated myself to go on one more machine. I picked one that was a low seated bike and after 10 minutes got really dizzy, thought the room was spinning. The dizziness continued on and off for a few days and then I felt my nerves on the left side of my brain feel watery and activated.

Following that intermittent numbness on the left side of my face and my right arm along with headaches. I’ve had an MRI, CT scan and all my vitamins checked and everything came back normal.

I’ve seen a neurologist who wasn’t worried said I have BPPV, gave me exercises to work on and put me on amitriptyline 10 mg and this has significantly helped. The biggest difference was 12 weeks into the medication.

Still get some nerve activations but nothing like before, headaches have also almost disappeared. I’m not sure if it’s the meds doing the heavy lifting, or if I’m actually recovering - how can you tell?

I often get the tingling in my face left side and right arm and feel some nerve sensations in my head Drs said it was the vertigo from the gym which then caused all the migraine and nerve pain. Does that chime with anyone else?

Once I did the vertigo exercise every day for three weeks the dizziness stopped. I’ve also been doing physiotherapy on my thoracic spine.

My life fully turned upside down, I am a big socialiser who works in music and all of that had to change significantly. No more late nights, no alcohol (although that’s not a big deal for me). But it’s hard when you’ve invested 10 years into something that you have to change your relationship with out of nowhere.

Anyway..

My questions:
Is there anything more I can be doing to speed up the process? I’ve been on the medication for 15/16 weeks and want to be off them before the end of the year
Are there other tests I could look at doing?
Has anyone else experienced anything similar and found what helped / have an indication of how long it took?
Are there any exercises that could help?

While I have a prolapsed disc in my lower spine which causes sciatica, this nerve pain is unlike anything I’ve ever experienced. Had to start therapy to help adapt to a new life.

If you’re in the thick of it, it does get better ❤️ I was too scared to open Reddit when it first started because I didn’t want to freak myself out but now I’m more confident in my recovery journey, I’m ok to open up to see if there’s anything more I could be doing.

Biggest takeaway is recovery is non-linear and that’s ok !! Nothing in life is.

I'm newly diagnosed (11 days), so I have much to learn. It seems like thunderstorms or sometimes rain will activate my symptoms (I struggle to call it dizziness. It's like the ground or air around me is moving or pushing me). Unfortunately I can't control the weather. Is there anything I can do to not feel like this whenever Mother Nature decides to storm? Will I be less sensitive if I somehow find my triggers (or combinations that sweet me off) and are able to avoid or manage them?

I've only recently started driving again after having a few symptom free days in a row. I really don't want to be at the mercy of the weather for risk of feeling off when behind the wheel.

I bought Victory Over Vestibular Migraines and have yet to watch The Steady Coach. So I have some information at my fingertips (AI has steered me wrong countless times, so I don't trust it).

What is your experience? I realize mine might be different; I am curious which avenues may be available.

Would love to hear your experience in them helping with VM!

всем привет!

девушка, 21 год, страдаю мигренью

таблетки по типу суматриптана помогают раз через раз, эксенза раньше хорошо помогала, сейчас нет, пила полгода антидепрессанты, набрала 20кг, и лучше не стало. делала различные уколы, витамины, массаж, все бесполезно

недавно невролог назначала капоризу, тоже помогала, потом нет, из последнего назначали нуртек, пила одну таблетку, помог

я парю, не Сказать чтоб прям много ~ 200 затяжек в день, хотя может и много:), связывала свои боли с вейпингом, бросила парить 22 июля, боли продолжились, но фоново, суматриптан помогал, но в этот же период выпила первую таблетку нуртека

вчера снова начала парить, так как вау эффекта не заметила

друзья, у кого был похожий опыт, поделитесь мыслями 🙏

сижу в раздумьях, бросать или не бросать, да, знаю что вредит здоровью, но пока не особо хочу бросать и все таки не заметила прямой связи вейпинга и мигрени

как у вас? делитесь, буду рада почитать

Hi!

About 3 weeks ago I started 400mg magnesium and 400mg b2. For the past week or so I have been so tired, sleepy, have no energy and just out of it for most of the day. Has anyone experienced similar side effects on either of these supplements? I am not sure if these are side effects from the supplements or from something else. I was fine taking them for the first couple of weeks.

I had Botox for my VM three days ago and I’ve been much dizzier than it was before. I’m also getting on and off chills:sweats.

I’m hoping there are others out there that have had similar and it improved? If so, how long did it take. This was my first injection and waiting three months for it to wear off feels miserable.

Edit: I mean to say, if your VM symptoms got worse after Botox injection, how long did it take to get back to your baseline?

I have vestibular migraines since about a year ago and have been able to keep them under control mostly through proper sleep, hygiene, giving up alcohol and a heavy mix of supplements.

I am going on vacation to the beach next week and would like to “let loose“ a little bit… I’m not interested in drinking alcohol. And a beer is fine by me, but I’m considering taking some low-dose marijuana Gummies to chill.

Anyone with vestibular migraines have a reaction to these? I know it really depends on the brand and individual symptoms, but I was hoping to hear some anecdotal stories about how people fared when taking some Gummies.

For reference I’m looking at doing low-dose maybe 2 to 5 mg and not all that often. Just maybe a couple days while we’re on the beach

Has anyone had their migraines change, say from a typical migraine to vestibular ones?

Hi!

How do you prepare for an appointment when symptoms have significantly worsened? Any advice on quantifying it or describing symptoms? I’ve struggled with self-advocacy but it’s never been a huge issue because I was relatively stable so I’m not sure how to best navigate an appointment (for the worsening symptoms to be believed, signed a woman with anxiety that is apparently to blame for everything!).

I have an appointment with a new NP in my neuro’s office. My neuro isn’t the best at listening to me (appointments are always rushed and she defaults to increasing meds regardless of what I say), but the other NP has been an amazing advocate for me. Given the nature of my symptoms right now, I feel like this appointment is especially important.

I started a monthly injectable 2 months ago and before my second dose, i had one of the worst migraines in recent history. I assumed it was related to withdrawal as my injection day was approaching (oh how I wish it was). Since then I’ve had constant headaches that are between 6-8/10 pain. I’ve had both toradol shots and steroid tapers and neither have helped. Rescue meds and OTC meds haven’t helped. This is unlike my usual migraines because my only symptom is the headache. It has minorly affected daily living only because I am not currently working. But this headache is exhausting and frustrating on its own! I want to be best prepared for this appointment to make sure my treatment plan adjusts accordingly while still hoping this is just a fluke migraine season!

El día de hoy por fin tengo mi cita con el neurólogo para tratar mi dolor de cabeza, vértigo y mareos que tengo desde hace tres semanas, todo comenzó por un dolor de cabeza y de ahí eh estado buscando síntomas y síntomas y llegué al punto de estar con ansiedad todo el maldito día, pero hoy por fin tengo mi cita … consejos? recomendaciones ?

I’ve been reading Dr Shin Behs book, and he mentions using a Magnesium chloride topical and menthol. Has anyone found any topicals they like?

I’ve so far I’ve had allergic/adverse reactions to 3 prescription medications (Nortriptyline, Venlafaxine, and Sumatriptan), and had a strange reaction to the Magnesium glycinate that the Drs are even stumped about. I took my first dose of the Pure Encapsulations 120mg (just one to test) and I felt the best I had as far as relaxation, which helped my overall symptoms. The relaxation let me sleep deeply for the first time since this started for me in May. However, I was accidentally startled awake by my hubby at 2:00AM (I took the dose at 7:00PM) and proceeded to have full body tremors/shakes for about 20 mins, like an adrenaline rush. My blood pressure was normal/low for me, my blood sugar was normal, heart rate was normal, but I just couldn’t stop shaking. Since the magnesium was the only thing that changed, my Neuro said to discontinue until they could see me (not until October). I’m bummed because it could tell it would have helped greatly. I’m currently without any preventative or abortive measures due to my reactions, and need to find something to get me through to my specialist appointments and the PT that is starting soon. I’m hoping a topical could do the trick as it’s not ingested.

Side note, I’m overall sensitive to medications, but I’ve never actually had allergies or adverse reactions until I’ve had to delve into these SSRI and SNRI classes. I’ve especially never had reactions to supplements or herbs, and have historically had very good success with them, often using them with better results for other health issues.

Does it reduce your dizziness/ vertigo, unbalanced feeling and swaying? For me it only slightly reduces those sensations if anything but it does help with head pressure/fullness and if I actually have any head pain. I have taken it multiple times now and still feel very wobbly even after several hours :/

29M, 155lbs, 5'10, White, duration 14 years.

Disclaimer: This is going to be a very long post. I will use AI AFTER writing to help with the flow and readability, so if this reads as "AI slop" that will be why, but everything mentioned and time line of events will be accurate to how I remember.

14 Years of Chronic Dizziness and Vertigo — Now Progressively Worsening

I have been chronically dizzy for about 14 years. Over the past few months, things have deteriorated to the point where I am no longer able to comfortably walk, exercise, or even sleep. I feel like I have lost a huge part of my life to this, and I am increasingly desperate to understand what is happening and what I can do about it.

How It Started — 2012

Everything started when I was 15 years old, around the middle of 2012. I cannot remember the exact first time I became dizzy, but I know it was sometime around then.

One potentially relevant detail is that I was undergoing vision therapy when my symptoms began. My left eye turns inward, and I wear glasses to correct my vision. At the time, I was going to vision therapy once a week and doing various exercises involving my left eye. I have no idea whether this is related, but I think it is worth mentioning given the timing.

My vestibular symptoms initially consisted of brief but extremely intense attacks of true room-spinning vertigo. They generally lasted about 15–30 seconds and were completely spontaneous. They were not triggered by head movement, body position, standing up, rolling over, or anything else I could identify.

I could be sitting completely still without moving my head when suddenly it would feel almost like I had been hit in the side of the head with a baseball bat, followed immediately by violent room-spinning vertigo.

Once the spinning stopped, I would usually feel somewhat "off" for the remainder of the day. By the next morning, however, I would generally feel normal again and almost forget the attack had happened.

These attacks occurred roughly once a month. They almost never happened more than once in a day and very rarely, if ever, happened more than once in a week.

Between attacks, I was essentially asymptomatic. The only difference I noticed was that I seemed to become unusually sensitive to things that would normally make someone dizzy. For example, if I spun around in circles, I would become much more dizzy than I remembered previously, and the sensation would linger considerably longer.

At the time, I remember thinking, "I'll just avoid roller coasters and spinning rides and I'll be fine."

December 2012 — The Beginning of the Chronic Symptoms

This pattern continued for approximately five or six months.

Then, in December 2012, I had another vertigo attack after taking the PSAT. A few classmates and I were goofing around and blowing off steam after finishing the exam when I suddenly had another attack.

The attack itself was no different from the ones I had experienced previously.

The difference was what happened afterward.

Normally, the residual "off" feeling would disappear by the following morning. This time, I went to sleep and woke up the next day still feeling it.

It never completely went away.

That was the beginning of the chronic dizziness and disequilibrium I have experienced ever since.

The best way I could describe my symptoms at that time was a sensation of motion that was not actually occurring. Even while completely stationary, I felt as though I were moving. I frequently described it as feeling like I was constantly on the verge of another vertigo attack.

Moving my head could also produce a strange lingering sensation of motion after my head had already stopped.

I continued to have the spontaneous spinning attacks on top of these chronic symptoms. It often seemed that whenever I finally started improving, I would get hit with another vertigo attack and feel like I had been knocked back to square one.

Motion Initially Made Me Feel Better

One of the strangest—and at the time most helpful—aspects of my symptoms was that actual physical motion dramatically reduced them.

Running, playing sports, walking, riding in a car, taking a train, and even flying on a plane would generally make me feel considerably better. Sometimes my symptoms would almost disappear while I was physically moving.

It was almost as though real motion drowned out the false sensation of motion my brain was producing.

Conversely, one of the things that made me feel the worst was sitting still in a hard, rigid chair. Going to a restaurant and sitting upright in a hard wooden chair could make me extremely uncomfortable.

Sitting in a soft chair or lying on a bed was considerably easier.

This relationship with motion remained a major feature of my condition for many years.

Initial Vestibular Testing — 2013

I underwent vestibular testing in early 2013.

The main abnormal finding was approximately a 45% unilateral caloric weakness on the left side. There may also have been an abnormal or reduced left oVEMP response.

As far as I remember, everything else was essentially normal, including rotational chair testing and hearing.

I was prescribed vestibular rehabilitation therapy.

The exercises could provoke some symptoms, particularly after repeated head movements, but the therapy ultimately had essentially zero effect on my day-to-day condition. I became better at performing the exercises, but getting better at the exercises did not translate into feeling better in everyday life.

The therapy did not seem to meaningfully improve or worsen my baseline symptoms.

The Following Years

For years, this became the general cycle of my illness.

I had good days and bad days. I continued having spontaneous spin attacks. Sometimes I might have two attacks relatively close together, while at other times a month or more might pass between them.

My baseline chronic symptoms also fluctuated considerably.

What frustrated me most was that I could never identify a reliable pattern.

My symptoms did not seem consistently related to what I ate, how active I was, how stressed I was, or even how much I slept. During college I could occasionally pull an all-nighter without noticing any meaningful difference in my dizziness.

There were, however, a few consistent characteristics that developed and remain true today.

Vertical head movements have generally been more provocative than horizontal head movements. Looking up and down tends to bother me considerably more than turning my head left and right.

There is also a diagonal direction that tends to feel particularly abnormal—usually moving from looking down and to the left toward looking up and to the right. Oddly, this sometimes reverses and the opposite diagonal becomes worse instead.

Over time, the nature of the spontaneous attacks also changed somewhat.

I began experiencing attacks where I would feel an intense spinning sensation internally without actually seeing the room spin. In other words, I could experience what felt like vertigo without the obvious visual spinning I experienced during my earliest attacks.

Another pattern became increasingly apparent: a sufficiently severe spin attack could permanently or semi-permanently worsen my baseline symptoms.

The increased symptoms might gradually improve over weeks or months, but I would not necessarily return completely to my previous baseline.

Despite this, my condition remained relatively stable for many years. It substantially affected my quality of life, but I was still able to function.

Repeat Vestibular Testing — 2019

In March 2019, I traveled to California for another comprehensive vestibular evaluation.

The results were remarkably similar to my original testing approximately five years earlier.

My caloric testing again showed a significant left-sided unilateral weakness—this time approximately 48%.

My left oVEMP was also reduced, with approximately a 63% asymmetry between sides.

However, the remainder of my testing was again essentially normal. My hearing remained normal, and importantly, my vHIT was normal, despite the significant caloric weakness.

I underwent another course of vestibular rehabilitation therapy afterward, again without meaningful improvement.

Brain MRI Imaging

Over the course of this illness, I have also had two brain MRIs, both of which were unremarkable.

Neither MRI identified a structural brain abnormality that explained my symptoms.

Change in Symptoms Beginning in 2021

Things began changing around 2021.

I want to be careful with how I describe this because I am not claiming causation, only describing the timing of what happened.

I received the Moderna mRNA COVID vaccine shortly after it became available to essential workers. I was actually extremely excited to receive it.

Approximately ten minutes after the vaccination, I began feeling very lightheaded and faint. I went outside because I thought I needed some air, but I felt unusually disoriented and dizzy.

I tried going for a walk because historically movement had almost always made me feel better.

This time, it did not.

It is difficult to describe exactly what felt different, but this seemed to mark the beginning of a gradual change in the character of my condition.

After this period, I began noticing that waking up in the morning and opening my eyes could make me feel dizzy. More importantly, motion was no longer reliably suppressing my symptoms the way it had for most of my life.

Over the following several years, I continued experiencing flare-ups and spontaneous spinning attacks. Following some of the larger attacks, my baseline symptoms would worsen. I would eventually partially recover, but increasingly it seemed that I would not return all the way to my previous baseline.

This process occurred gradually rather than as one sudden decline.

Summer 2023 — Two Major Flare-Ups After Alcohol

In the summer of 2023, I experienced two major flare-ups that occurred after drinking small amounts of alcohol.

I think it is worth mentioning that I had generally avoided alcohol ever since my dizziness began. I would occasionally drink a small amount in social situations, but I was never drinking heavily.

I cannot say for certain that alcohol caused either episode, but the timing was striking enough that I think it belongs in the history.

Late May 2023

The first flare-up happened in late May 2023 after I had approximately half of a vodka cranberry the night before. It was a very small amount of alcohol.

The following day I initially felt generally fine and drove toward my grandmother's house.

While I was driving, I suddenly had a severe vertigo attack.

This attack was somewhat different from the obvious room-spinning attacks I experienced when I was younger. There was no noticeable visual spinning or nystagmus. Instead, I experienced an intense internal sense of spinning and disorientation that was difficult to describe.

I had to pull the car over.

Historically, my instinct when something like this happened was to walk because movement almost always made me feel better. I got out and attempted to walk it off, but this time walking was not helping nearly as much as it had in the past.

My dad ultimately had to drive me home.

I took a long nap afterward and felt considerably better when I woke up. I believe I also took approximately a week off from the gym afterward before gradually returning to my usual routine.

At the time, I viewed it as another bad flare.

A few weeks later, however, I experienced a much more significant episode.

June 2023 — The Flare-Up That Changed My Life

In mid-June 2023, I went out with a friend and drank even less alcohol—approximately half of a White Claw spread out over the course of several hours.

At around 4 a.m., I remember briefly feeling some spinning, but it passed.

I eventually went home later that morning and fell asleep.

I woke at approximately 11 a.m. and was sitting on my laptop watching YouTube when I was suddenly hit with another attack.

This one felt extremely strange and was difficult for me to describe even at the time.

It was not necessarily classic room-spinning vertigo. It felt more like a profound loss of spatial orientation, possibly with a leaning or pulling sensation. Whatever the exact sensation was, it was extremely intense and immediately triggered panic because I felt as though my brain had suddenly lost its ability to understand which way I was oriented.

I stood up because standing and moving had historically helped.

It did not help.

That frightened me even more.

I went outside and tried to walk because walking had been my most reliable way of suppressing my symptoms for almost a decade.

For the first time, walking genuinely was not making the symptoms go away.

I continued walking anyway and eventually noticed something very strange: walking while looking down at my phone was substantially more tolerable than walking while looking ahead and moving my head normally.

As long as I kept my head relatively still and focused visually on my phone, I could tolerate walking somewhat better.

I ended up walking for hours and hours.

Another problem quickly became apparent. Whenever I stopped walking, my symptoms would intensify again. This created a situation where it felt as though I had to remain in motion for most of the day just to keep myself somewhat functional.

This flare did not resolve in a few days or even a few weeks.

The severe symptoms persisted through the remainder of 2023 and did not begin improving substantially until early 2024.

This episode effectively ruined my final semester of school.

My symptoms during this period were actually quite similar to what I am experiencing now, with one important difference: if I walked for long enough, it would usually eventually help.

When I say "long enough," I mean hours.

I was sometimes walking for six hours or more per day simply because it was one of the only ways I could eventually reach a somewhat tolerable state.

New Brief Spins and Pulling Sensations

This was also around the time that I began experiencing the frequent, random short spinning and leaning sensations that continue to occur today.

I could be completely stationary and suddenly feel a slow internal spin, lean, or pulling sensation lasting perhaps 10–15 seconds before it stopped.

There did not need to be any movement or positional trigger.

These sensations became part of my everyday symptoms and have never completely disappeared.

My Daily Routine During This Period

My life during the second half of 2023 essentially became:

Wake up extremely symptomatic → skip class → walk for approximately six hours → try to eat something → continue walking until dark → go home → sleep on the floor → wake up the next morning and repeat the entire process.

It was a truly miserable existence.

One of the strangest and most consistent patterns was that my symptoms would often improve as the day progressed.

By nighttime, after hours of walking, I could sometimes feel considerably better than I had that morning.

But then I would go to sleep.

When I woke up the following morning, it was almost like everything had completely reset. I would once again be severely symptomatic and have to start the entire process of gradually becoming functional all over again.

This was very different from earlier in my illness, when sleep did not have a meaningful or consistent effect on my symptoms.

Sleeping on the floor also seemed easier during this period than sleeping normally in a bed, something that has again become relevant with my more recent worsening.

Partial Recovery, But Never Back to Baseline

Things gradually improved in early 2024, but I never truly recovered from the June 2023 flare.

I eventually reached a point where I could function again. I could attend to daily responsibilities, return to the gym, and live a relatively normal-looking life from the outside.

But the way my vestibular system behaved had permanently changed.

Walking was no longer reliably therapeutic.

If I walked while looking straight ahead or moved my head normally, I could randomly experience spinning, pulling, or intense disequilibrium. Looking down at my phone while walking often remained considerably easier.

The random brief internal spins and leaning sensations also continued.

Physical motion no longer "drowned out" my symptoms in the way it had for the first several years of my illness.

I learned to function around all of this, and I actively tried not to allow it to dictate my life. I returned to the gym and continued doing normal activities, but it remained a constant battle in the background.

I also underwent another round of vestibular rehabilitation therapy during this period, again without meaningful improvement.

In retrospect, I view the June 2023 episode as one of the most important turning points in the entire course of my illness. Before it, motion had gradually become less effective at suppressing my symptoms, but afterward the change became unmistakable.

I partially recovered, but I never returned to the vestibular baseline I had before that summer.

Major Deterioration Over the Past Few Months

Over the past few months, my condition has changed dramatically again and has become far more disabling.

In many ways, it feels like a more severe version of what happened to me in 2023.

The biggest difference is that the strategy that eventually allowed me to function during the 2023 flare—walking for long periods—is no longer reliably working.

Beginning to walk is always difficult and initially makes me feel worse. I develop increased disequilibrium, instability, and sometimes a sensation as though I am walking on a boat or something inside my head is moving or sloshing around.

What happens after that is unpredictable.

Sometimes, if I force myself to keep walking and push through the initial worsening for long enough, my symptoms will eventually begin to improve. This can take a significant amount of time, and on some occasions prolonged walking still seems to help in a way that is somewhat reminiscent of how motion helped me earlier in my illness.

Other times, however, the opposite happens. Instead of eventually settling down, the symptoms continue to build as I walk and I become progressively more disoriented, off balance, or experience stronger pulling and spinning sensations.

The key difference compared with earlier in my illness is that walking used to reliably make me feel better almost immediately. Now it reliably makes me feel worse at first, and I have no way of knowing whether continuing to walk will eventually help or simply make things worse.

At times I have to stop walking completely, stand still, and wait for my brain to seemingly stabilize again.

I also experience episodes where I feel as though I am being physically pulled to one side while walking. The direction is not completely consistent. It is often a strong pull toward the right for perhaps 15–30 seconds, sometimes followed by a pull or rebound toward the left before things stabilize.

Other times the direction is reversed.

This is not merely a fear that I might fall. I actually perceive my orientation as being pulled or shifted sideways.

Busy visual environments make this substantially worse. Walking outdoors can be much more difficult than walking around inside my apartment. Looking straight ahead while walking is often particularly uncomfortable, whereas looking downward at my phone can sometimes make walking noticeably easier.

Interestingly, being in a moving vehicle can still sometimes make me feel better, particularly if I am looking at my phone. Even a somewhat bumpy bus ride can at times feel more comfortable than simply walking down the street.

Delayed Symptoms After Movement

Another strange feature has become much more noticeable.

Head movement itself does not necessarily make me dizzy immediately.

I can move my head and feel relatively normal during the movement, but then 10–20 seconds after stopping, I may suddenly develop a sensation of spinning, pulling, or continued motion.

It can almost feel as though my vestibular system reacts to the movement after the movement has already finished.

Slower, lower-frequency head movements also seem to bother me more than quick or snappy movements.

Up-and-down head movements remain substantially worse than left-to-right movements, and the strange diagonal asymmetry I described earlier is still present.

Frequent Brief Spinning Sensations

I am also now experiencing brief spinning sensations much more frequently throughout the day.

I can be sitting completely still and suddenly feel a short, slow rotational movement that lasts only a few seconds and then stops.

Other times it is much sharper—almost like a very quick jolt or sudden rotation.

Many of these newer attacks are more of an internal sensation of spinning or rotation rather than obvious visible room-spinning vertigo.

They occur spontaneously and are not reliably reproducible with a particular head position.

Sleep Has Become Extremely Difficult

Sleep has also become one of my biggest problems.

Historically I generally felt worse after sleeping, but recently the effect has become extreme. I can wake up feeling profoundly dizzy, disoriented, off balance, and nauseated.

Even a relatively short nap can sometimes leave me substantially worse.

For a period of time I discovered that sleeping on my right side seemed to reduce the problem, but eventually even that stopped working reliably.

Strangely, sleeping on a firm surface such as the floor sometimes seems to leave me feeling considerably better than sleeping in my bed.

There have also been nights where closing my eyes makes the sensation of movement or spinning significantly more noticeable, while opening my eyes and obtaining a visual reference makes me feel more oriented.

This has made falling asleep extremely difficult because I can feel relatively stable with my eyes open and then begin feeling movement again after closing them.

I have awakened after less than an hour of sleep with severe vertigo or disequilibrium and then been unable to comfortably go back to sleep.

Exercise Can Now Trigger Major Flares

My ability to exercise has also deteriorated.

Recently I attempted to return to the gym after taking approximately a month off because my symptoms had become so severe.

I did only two sets of pull-ups.

That was enough to trigger such severe vestibular symptoms that I had to leave the gym. I developed intense disequilibrium, nausea, and vestibular fatigue, and the flare persisted through the night and into the following day.

This is dramatically different from earlier in my illness, when running, sports, and strenuous physical activity were some of the most reliable ways to make myself feel normal.

Other Recent Features

At one point recently, when attempting to walk heel-to-toe with my eyes closed, I unexpectedly drifted dramatically toward the left. This degree of directional drift was new for me.

I also sometimes notice that closing my eyes while standing or lying down makes my sense of orientation substantially worse.

I continue to have intermittent tinnitus. Occasionally one ear—more often the right recently will briefly feel muffled and then develop a high-pitched ringing sound lasting roughly 10–30 seconds. I have also occasionally experienced milder ringing lasting longer. Note that the muffled and then ringing has happened for many years and I am not sure is actually related.

Historically, however, my audiograms have been normal.

Perhaps the hardest part to explain is that my symptoms increasingly feel as though my brain cannot establish a stable reference for where I am in space.

I can feel relatively normal for a moment and then suddenly experience pulling, rotation, or continued motion despite nothing around me actually moving.

Recent BPPV Diagnosis and Treatment

More recently, my neurologist has diagnosed or strongly suspected BPPV as an explanation for at least some of my current symptoms.

Because of this, I have been doing physical therapy specifically focused on BPPV, including positional testing and repositioning maneuvers.

So far, I have not noticed meaningful improvement. In fact, during the period I have been undergoing this treatment, my overall condition has continued to become worse.

However, I want to emphasize something that I think is important:

I do not notice a clear correlation between the BPPV maneuvers and how bad I feel afterward.

The maneuvers themselves can temporarily provoke dizziness, but I have not noticed a pattern where performing a maneuver causes my larger deterioration or prolonged symptom flares. Likewise, going without maneuvers does not reliably make me better.

My overall worsening seems to occur somewhat independently of whether a repositioning maneuver has been performed.

This makes me question how well BPPV explains the overall history.

My original vertigo attacks were completely spontaneous. I could be sitting perfectly still when I suddenly developed intense room-spinning vertigo for 15–30 seconds.

They were not caused by rolling over, lying down, looking upward, turning my head, or assuming a particular position. Once the attack stopped, I could not reproduce it by repeating a movement or position.

Even now, many of my brief spinning sensations occur while I am completely stationary and are not reliably linked to a particular head position.

I understand that it is entirely possible to have BPPV in addition to another vestibular disorder, and I am not trying to dismiss my neurologist's diagnosis.

What I am wondering is whether BPPV really sounds like an adequate explanation for this entire history, particularly the spontaneous attacks that began years before my current deterioration and the persistent symptoms between those attacks.

If BPPV is currently present, could it realistically explain the massive change in my baseline symptoms—including difficulty walking, lateral pulling sensations, severe symptoms after sleep, delayed symptoms following movement, and spontaneous spinning while completely stationary?

Or does this history sound more like BPPV may be one component of a larger vestibular disorder?

Could Vestibular Paroxysmia Be Relevant?

Another diagnosis I have recently been wondering about is vestibular paroxysmia (VP).

As far as I know, this has never been seriously considered as an explanation for my illness by the doctors I have seen.

The more I have read about VP, however, the more I wonder whether at least the earliest part of my history has some similarities to it.

My illness began with sudden, extremely intense, very short attacks of vertigo lasting approximately 15–30 seconds.

The attacks were:

• spontaneous,
• capable of occurring while I was completely stationary,
• not reliably triggered by head position,
• not reproducible afterward,
• and followed by a period of residual disequilibrium.

Initially, I was almost completely normal between attacks.

The attacks then continued after my chronic symptoms developed.

Over time, the attacks also seemed to evolve. Some of them became more like a very intense internal sensation of rotation without the obvious visible room-spinning that characterized my earliest episodes.

I understand that my history may not be textbook vestibular paroxysmia.

One difference is that my attacks historically occurred much less frequently than what is often described in VP. Sometimes I might only have one attack every few weeks.

I also now have extensive chronic symptoms between attacks.

However, the duration and completely spontaneous nature of my original attacks are part of why I continue to wonder about it.

I have also wondered whether an intermittently unstable vestibular signal could potentially help explain why I have never seemed to compensate normally despite multiple courses of vestibular rehabilitation.

I have a repeatedly demonstrated left-sided vestibular abnormality, yet rehabilitation has never meaningfully changed my baseline symptoms.

If the problem were simply a single old, stable unilateral vestibular injury, I would have expected some degree of compensation over the course of more than a decade.

Instead, it often feels as though every major spontaneous attack destabilizes things again.

I am not saying that I definitely have vestibular paroxysmia. I am mainly wondering whether my early history is compatible enough with VP that it deserves to be seriously investigated rather than dismissed.

Where I Am Now

For most of the past 14 years, I was able to build my life around this condition.

It was always there and significantly affected my quality of life, but I could still walk, exercise, travel, work, and use physical movement as one of the most reliable ways of reducing my symptoms.

That is what has changed.

The summer of 2023 was the first time that this relationship with motion fundamentally broke down. I eventually improved enough to function again, but I never returned to my previous baseline.

Now, over the past few months, the same type of problem has returned at an even greater level of severity. Walking itself can worsen the symptoms, exercise can trigger prolonged flares, and even sleeping can leave me dramatically worse.

I have undergone vestibular rehabilitation multiple times without meaningful benefit.

Historically, objective vestibular testing has repeatedly demonstrated approximately a 45–48% left caloric weakness and a significantly reduced left oVEMP, while rotational chair testing, vHIT, hearing tests, and much of the remainder of my vestibular testing have been normal.

I have also had two unremarkable brain MRIs.

More recently, my neurologist has diagnosed or suspected BPPV, and I have been undergoing BPPV-focused physical therapy and repositioning maneuvers. I have not noticed improvement and have continued to deteriorate. Importantly, I cannot identify a meaningful relationship between when the maneuvers are performed and when my larger symptom flares occur.

What I do not understand is what condition could produce spontaneous short vertigo attacks beginning in adolescence, leave a persistent sensation of motion between attacks, remain relatively stable for years, and then progressively evolve into these much more severe episodes involving difficulty walking, pulling sensations, delayed responses following movement, frequent brief internal spins, exercise intolerance, and severe symptoms following sleep.

The main questions I am hoping someone can help me think through are:

1. Does BPPV actually fit this history, particularly given that my original and many current attacks occur spontaneously while I am completely still?

2. If I do currently have BPPV, could it realistically explain the enormous deterioration in my baseline symptoms, or does it sound more likely that BPPV is occurring on top of another vestibular disorder?

3. Do my original 15–30 second spontaneous vertigo attacks sound compatible enough with vestibular paroxysmia that VP should be more seriously investigated?

4. Could an episodic or fluctuating vestibular disorder help explain why I have had such difficulty achieving lasting vestibular compensation despite years of symptoms and multiple rounds of rehabilitation?

5. Is there another disorder that could explain the combination of persistent left caloric weakness, reduced left oVEMP, normal hearing, normal vHIT, spontaneous brief vertigo attacks, and poor long-term compensation?

6. Does the major change in my relationship with motion—particularly the severe 2023 flare and the fact that prolonged walking initially helped but now often makes me worse—suggest anything diagnostically?

7. What additional testing or type of specialist would be most useful at this point given how dramatically my function has deteriorated?

I am not expecting anyone online to diagnose me. I am mainly hoping someone familiar with vestibular disorders might recognize the pattern, tell me whether the current BPPV explanation makes sense, or suggest possibilities that would be reasonable for my doctors to investigate.

At this point, I just want to understand what is happening and find some way to get back to a level where I can comfortably walk, exercise, sleep, and live normally again. Thank you if you got this far.

Hi, I have found that low decibel sounds trigger my migraines. Like certain cars running, certain sounds in retail stores (maybe like fridges, AC), or sometimes even certain songs have background sounds that are really low and it makes me feel like my eyes are crossed and my head is inside out (like when you cant tell where you are but the opposite. You can tell where you are but not where everything else is). Nausea inducing.

I have my neurology appointment tomorrow and have really bad luck with doctors. I am confident that is one of the things triggering my migraines, but i wanted to know if this happens to anyone else before I bring it up. Im scared that they won't believe me, so id rather bring up more common triggers than something that they may not have heard of.

Let me know if this happens to you, I'm very curious

I am currently coming towards the end of what I now know is a vestibular migraine attack. For months I've been dealing with persistent dizziness and intense nausea. I was also getting on and off headaches, ranging from mild to incredibly painful, where it feels like my entire head, neck and shoulders are throbbing.

I am based in the UK and saw my GP yesterday. She said it sounds very much like vestibular migraines and has prescribed me with sumatriptan and lansoprazole (for a different issue). I did ask about anti nausea meds as it gets so intense but she said she didn't want to 'over treat' me at this stage and has encouraged me to keep a symptom diary. I was asked to return in 3 weeks if there's been no improvement.

I understand that there can be many, many different triggers to migraines and I am yet to track what mine are. Though I do suspect that changes in weather, stress and potentially hormonal changes through my cycle are the main ones.

Other than medication, what else can help with vestibular migraine attacks? Anything holistic or supplements? Any specific diet changes during attacks that may help?